Ben's OT evaluation and a video showing receptive speech

I got the written OT report in the mail this week, and it was interesting to see on paper how similar Ben's OT needs are to Liam's. The OT listed the following as areas of concern:
-decreased fine motor skills
-decreased visual motor skills
-decreased bilateral coordination
-decreased self-help skills
-decreased social interaction/play skills
difficulties with sesnory processing and modulation, particularly in the following areas: auditory processing, oral processing, tactile processing, imapired self-regulation to modulate attention, behavior, and emotional responses as sesnory stimulation changes.

She recommends OT 1-2 times a week.

I finally downloaded photos off my camera.  With my fancy new iPhone, I am less motivated to download from the Nikon on a regular basis.  The video is a bit long, but shows Ben's issues with receptive language.  In the beginning, he is looking at animals and I am trying to ask him to name the animal or sound and he really struggles with managing it.  Then I start giving him a visual prompt by handing him the animal, and he does MUCH better.  This shows how much he relies on visual prompts.  Then we end by counting because that is what he loves to do.

A surprise package from a long distance friend

The following arrived in the mail today from a friend I met through Mom's Club here in Alaska.  Yeah, I cried as I read that card which said such nice things about me.  I am honored to have a friend like her.

Looks like we are headed to our 3rd ear tube surgery

My boys don't nap, so when Liam falls asleep for his 3rd during the daytime and it is at the emergency room, then you know he is quite sick. 

We have had a cough/cold yucky sickness in our house for about a week.  I thought that alone was bad as I was unable to move on Friday and for days Ben cried unless I held him 24/7. 

Then Sunday Liam woke up crying that his right ear hurt.  I didn't take it too seriously as he has ear tubes and that should relieve any pressure or pain or swelling from ear infections.  I was thinking maybe he got strep throat and it was causing ear pain.  Then he threw up in the master bedroom, and spent all mroning laying around and occasionally crying.  Then he fell asleep on the couch and when he woke, he would not stop crying.

So Dave took him to the ER, and the doctor said he has an ear infection in his right ear and she could not see the tube due to swelling.  But in his left ear, there is a tube but it appears to be in the wrong place.  She sent Dave and Liam off with numbing ear drops and antibiotics.  We figured things would look up from there.

Then on the drive home, Liam puked all over himself, the carseat, and the car.  He is still crying that his ear hurts this morning, so it looks like we'll be cancelling any therapy and school.  He follows up with his PCM in 2-3 weeks and it looks like I will be asking for an ENT referral to discuss getting a 2nd set of tubes placed.

Speech milestone

Ben is saying his name!  He cannot answer the question "What is your name?" but while playing occasionally randomly touches his chest declaring "I'm Ben!"  It very likely is just delayed echolalia as that is the phrase I use.  I touch my chest and say "Mama" then touch Ben's chest and sai "and I'm Ben" so he'll learn to associate I with Ben.  But he is finally using his name.  Now to just get him to use it when prompted for it. 

Sadly, I was looking for when Liam started saying his name and cannot find it on the blog.  I think Liam was saying his name shortly after turning 2 (so eariler than Ben).  Dave deployed when Liam was 26 months and I think Liam was calling himself "yema" somewhere around that time (either shortly before or shortly after).  Around 2.5 (the age Ben is now), Liam started calling himself "Lema" and that stuck until after he started his special education preschool.  I think it was somethime in November of last year he started saying "Lium" and he still says it "My name is Leeeeeeeee-UM."  Ben has been calling Liam "Meme" for about a year now and refuses to refer to him as anything else.

Liam's OT re-evaluation, a Liam brag, and general update

I got the results of Liam's private OT re-evaluation.  He has been doing private OT for nearly 2 years now, but had a re-evaluation as he has been with his current therapist for a year.  I always find the testing interesting, and it certainly shed some light on why we are struggling to get Liam to qualify for OT in the schools.  The testing showed that his visual motor integration skills are above average, but his grasping skills are average.  I personally find this surprising as Liam still cannot use the correct grasp for holding a pencil/crayon.   His fine motor skills testing were similar as a toddler, he did not use a pincer grasp but tested above average as he compensated for it.  I still worry that lack of pincer grasp and inability to properly hold a pencil will be to his detriment down the road as he is expected to build on those skills.

The evaluation showed that Liam is on the low end of normal in self-care skills.  He made huge progress in this area this summer, so that shows how much therapy is paying off. 

The evaluation noted that he has low muscle tone and recommends physical therapy to address this need.

The sensory profile showed where Liam's greatest OT needs are.  It noted whether a sensory processing area showed "typical performance," "probably differerence," or "definite difference."  Liam did not have a single area of sensory processing that is in the normal range.  He shows a probable difference in sensory processing in areas of: visual processing, multisensory processing, activity level modulation, modulation of visual input affecting emotional response & activity level, and emotional/social responses.  Liam shows a "defnite difference" in sensory processing in the areas of: auditory processing, vestibular processing, touch processing, oral sensory processing, sensory processing related to endurance/tone, modulation related to body position and movement, modulation of sensory input affecting emotional responses, and behavioral outcomes of sensory processing.

He has made significant progress through OT and will continue to do so, but he clearly needs the focus on sensory integration.

Now, for the cool Liam story or one of the ways that autism is cool.....

Liam has an amazing memory.  Liam also loves numbers and patterns. This weekend he was counting in a specific pattern.  He started at 90 and counted up to 99.  I thought maybe he didn't know the number "100" yet so I told him "100" after 99, and he responded "No!" and then said 80.  Starting at 80, he coounted to 89, and then counted 70 to 79.  So he was counting forwards by ones and backwards by 10s.  Earlier this week, I discovered he knows how to count to 15 in Spanish.  I have no clue where he learned this, so I told Dave.  Dave thought it was cool and counted to 10 in German ONCE.  Since that one time, Liam can now count to 10 in German.  He has recently started making up songs to include numbers in all three languages.

The general update is that based on Ben's forthcoming developmental evaluation, the base clinic has processed referrals for private speech, OT, and PT (physical therapy).  Based on Liam's OT re-evaluation, he will have a PT referral coming.  That means FOUR more weekly appointments.  During the Monday-Friday time, Liam has the following schedule: 8 hours of special education preschool (should be 10 but I pull him out one day for private therapy), 2.5-3 hours of time on the bus for transport to special ed preschool, 8.5 hours of church preschool, an hour of transport to and fron preschool, 3 hours of ABA, 1.5 hours of private speech and OT, 1.5 hours of transport between those appointments, and 1 hour of karate.  That makes for 28-29 hours of school, therapy, and driving.  That doesn't count the 3 hours weekly that Ben does for Early Intervention (total is now up to 31-32 hours a week).  In addition to that, I have time to feed both boys breakfast and lunch, and transporting them (getting outewear on/off, etc).  We will soon be adding 4 more hours, and who knows how many 45 minute driving triups between our house and the therapy center....when all is said and done in a 40 hour work week, me and the boys do 40+ hours of work/driving.  :-(

No wonder I am often craving more coffee.

Ben's developmental ped evaluation

The appointment was suprising for me and completely unexpected.  Beforehand, I said that I wouldn't be suprised if Ben was found to be on the autism spectrum and I wouldn't be surprised to find we wasn't.  The appointment had different results than I expected.....Ben was given a diagnosis of Early Childhood Developmental Delay.  The doctor explained that he doesn't believe Ben is on the autism spectrum and feels that his social skills are emerging.....BUT he sees 4 future results for Ben....option 1 is best case: we hit him with loads of early intervention and he outgrows his delays, option 2 is what the doctor suspects in most likely: Ben has a language delay (something along the lines of auditory processing disorder) which is interfering with his other areas of development, option 3: Ben will be diagnosed down the road with ADHD, and option 4: Ben will eventually be diagnosed on the autism spectrum if his emerging skills don't actually emerge.

The treatment plan the doctor laid out for us is private OT and speech on top of the early intervention.  He believes Ben would benefit from the special education preschool that Liam attends.  He wants Ben to receive ABA, but there is a catch....because Ben is not on the autism spectrum, Tricare will only cover 3 hours a week and it MUST be provided by a BCBA.  Liam's BCBA cannot provide those hours herself at this time.  We are still waiting for Tricare to make the referrals and Ben's PCM has not YET called us back, so at the moment, I am pushing ABA to the back burner.  Liam's BCBA feels Ben is on the spectrum and thinks we should get a second opinion.  I am struggling with feeling overwhelmed with all of this.  I never expected the doctor to find that Ben has 50% delays in multiple areas.  I don't exactly remember the numbers but will write a seperate post when his written report arrives.

There was good news.....The biggest is that the doctor absolutely thinks Ben should have allergy testing.  He was generally supportive of a theory of allergies and GI distress affecting development.  I noticed his library contained the book on special diets for special kids. :-)  The other news is that he told me that I should have a handicap parking tag.  He thinks this is for the saftey and well-being of other drivers, and not just to make my life easier.  I got it yesterday and haven't needed to use it yet, but that will likely change when the parking lots get snow covered.  Liam wasn't able to walk without falling last year.  This year that would mean carrying 70+ pounds of boys wearing winter gear through parking lots on either hip.  I am not sure I can physically manage that.  The last bit of good news is Ben's growth....36 inches tall and 28.5 pounds!!!!!!!!! 



An example of Liam's social skills and odds/ends

This story does deserve to be a post in its own right, but part of the reason for it is avoidance.  I will be posting about Ben's developmental pediatrcian appointment when I am done processing it.  For now, I will share his enormous growth.  Since a developmental pediatrician is a M.D., he had a well baby check while we was there.  Ben is 36 inches tall (40th percentile) and 28.5 pounds (I think it is 20-25th percentile).  His head was slightly above 95th percentile, so some things don't change.

It is cold here these days. In case, you need proof....

It was 17 degrees at 10am when Ben and I took a hike along the river.  There hasn't been snowfall yet, but the river banks are covered with frost that will stay on all the tree branches until March or April. 

So, back to the story about Liam.  Yesterday we went to an indoor playground on base.  There were 3 or so 5 year olds there as well.  One little boy was acting as the leader and developed a game he called "banana."  As far as I could tell, it was tag but instead of being "it" you were "banana."  He mostly used the game as a means of hugging the cute 5 year old little girl who was also playing.  I was shocked as how emotionally advanced these kids were, but I am probably not the best judge of "normal." 

The little boy wanted to include Liam in their game and attempted several times.  He tagged Liam and told him he was "banana" to which Liam started crying uncontrollably and saying "I am not a banana!"  I explained the rules of the game to Liam, and he just kept sobbing saying he didn't want to play, so I guided him through the steps of communicating that with the little boy.  The little boy tried one or two more times, but Liam would just keep his head down to cry so he eventually gave up.  Finally, Liam just came and sat next to me to take a break.  During this break, the little girl asked Liam to hide under the table with her and the two of them made their own game of "hide from the little boy."

Liam was occupied so I focused on Ben who kept crying because he couldn't climb through the tube which had an incline to it.  I checked  on Liam a couple times and noticed the little girl knew his name was Liam but he just kept calling her "girl."  I prompted him a couple times to ask her name but it wasn't effective apparently.  Finally, it was time to go and Liam told me "I want to keep playing with the girl.  It is not time to go."  I gave him his transition counting, and he hopped up and walked away and from a distance said "Bye girl!"  And then promptly seemed to forget all about her.  As we were walking away she yelled out "Bye Liam, I had so much fun playing with you.  Can you come back here tomorrow so we can play again?"  Liam never answered as he was already asking me if we had juice in the car.

That is an example of how a preschooler can look normal and function at a basic level in a social situation but have an inability to interact appropriately.  On the plus side his nonchalance will drive teenage girls wild.

Reindeer Farm, fall style

We last visited the Reindeer Farm last December when it was negative 7 out.  When I saw a Groupon for their fall festival (brand new program this year), I thought it might be enjoyable to go when it was a bit warmer out.  On our drive there, we saw temperatures in the 20s, but thankfully, the car read 32 degrees when we got out.  By the time we were done, it had warmed up to the 40's.  All and all, it was a beautiful sunny day.

Ben's first pony ride.  He was initially hesitent and reached for me, but eventually started saying "Wee Ho!" (his declaration for any ride that is fun) and made clopping and neighing sounds.

The pumpkin Mommy and Liam painted

The pumpkin Ben and Daddy painted:

Half birthday for my half pint

I will use a Little House on the Prarie reference any chance I can get.  I love those books, and miss the show.

Today Ben is 2 and 1/2 and I REALLY need to stop calling him "baby" Ben.  Liam has at least taken to calling him Benny.

At 2.5, Ben is about 36 inches tall and weighs about 27-28 pounds.  That means in the last year he has grown 5 inches and gained 5 pounds, which is really a HUGE growth rate at this age.  He is tiny no longer and is catching up to his peers.  His height is around 50th percentile and his weight is around 30th percentile. 

Over the last year, he has clearly lost his "baby" look and now resembles a toddler.  This was him at 18 months:

Even so, he still seems so much younger and smaller than Liam did at 2.5 years old (Liam was 32 pounds and 38 inches so he is smaller, but Ben also just seems younger than Liam at that age).

Liam at 2.5 years old:



And thinking back to when Ben was 6 months.....well, I have blocked most of it out, but this seems a lifetime ago:

Really, the only think I recognize there is the giraffe which still rarely leaves Ben's hands.

At 2.5 years old, you:
LOVE your giraffe
think Mommy can solve all problems
cry for Liam anytime we drop him off at school or therapy
climb everything--onto counters and tables, onto window sills, out of your crib, onto changing table
hide your face if I tell you that you are being naughty
prefer showers to bubble baths
still spit out food or gag on it
walk on your toes about 85% of the time, even while running and jumping on the trampoline
recognize lower and upper case letters
can count to 20
this WEEK said your name for the very first time!!!!!!!!! :-)
jump with two feet off the ground
walk a balance beam
go up and down stairs without holding a railing
climb into your carseat

Update on Ben's speech and school OT for Liam

Today was step 3 in Ben's developmental evaluation process.  We met with a SLP for a speech evaluation.  I had alot of anxiety going into this appointment and had 2 seperate nightmares about it last night.  Ben talked young and if you have been following us, you might have noted how advanced I used to talk about his speech being.  Sometime this year his speech development stalled out.  I was in denial for a long time, but at 2.5, he isn't regularly combing words and is relying on delayed echolalia and memorized pat phrases alot.  I just didn't want my fears confirmed.

This smiling little boy was NOT the Ben the SLP met today:

Ben really does not like coinfined spaces and when he saw the therapy room, he freaked out.  It resulted in a 30 minute screaming, crashing, flailing, flopping meltdown.  He eventually stopped and began to explore the room, but then he would see the door and start crying or screaming again.  The SLP asked me if I knew about behavior therapy and started explaining ABA to me. 

The end result is that Ben has an expressive language delay and needs more speech therapy. 

Our last appointment is next week and by the afternoon, we will know if Ben has a diagnosis.

In answering the questions for the SLP, the OT, and the psychologist about Ben's development, all 3 pointed out that I have structured his environment as if he were on the autism spectrum.  Because of Liam's needs, we do alot of visual schedules, transition activities/songs, and I limit the boys to situation that I know will be difficult for them.  I wonder how much worse his behavior would be if I didn't do these things.  Ben has attended therapy with Liam almost his whole life and I wonder whether he has benefited from it.  H is higher functioning than Liam, but is it because he was raised and benefited from the changes I made for Liam?

Speaking of Liam, I finally heard back from the school OT.  She is going to work with Liam on handwriting skills for 6 weeks and if he doesn't improve than she'll do a full assessment and add OT into his IEP.  She told me that Liam has alot of strengths, mainly his problem solving skills are extremely advanced.  She also pointed out the areas where it was clear that ABA has taught him skills....mainly in his execution of play skills and his ability to deal with change.  It was good to hear that as Liam appears so high functioning that I know people question why I have him in so many hours of therapy.  But the school OT confirmed that he blends in so well because he was taught skills through ABA that he wouldn't have figured out on his own.

In other fun news, Ben now climbs out of his crib, and climbs out as soon as he is put down for a nap.